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1st Oncology visit yesterday, difficult times

LauraandLarry's picture
LauraandLarry
Posts: 184
Joined: Sep 2012

Larry had his 1st visit yesterday with the Oncologist at Karmanos. For me the appointment was uplifting as the Dr was very informative and hopeful. The best part was that one of his very best friends is Dr Orringer at U of M ,who is world renowned for the treatment of this disease. They will work together hand in hand enabling Larry to have his treatments at our local hospital and then transfer to U of M for the surgery. He believes he is a late stage 2 or stage 3, he is having his EUS today. The hardest part right now is Larry is so angry. I have never seen him like this. I cant say I understand his anger, but I have seen it many times as I lost my mother,and father to cancer, and both of my sisters are survivors of cancer. I am having a difficult time dealing with him. Dr said he will start chemo using 5 different drugs, different cocktails at different times according to Larry;s body's response, and radiation at the same time. This will last for 3-4 months beginning in 2 weeks. Next week we will meet with Radiology Oncologist. As soon as she is ready to start he will begin.Larry doesn't want his kids to know any updates,and says if treatments make him sick he will not continue. At my wits end right now and trying to cope. I know some of it may just be panic, but I am so scared. I will let everyone know the results of EUG today. He also will have PET scan next week. So glad I found all of you.

ShellyAS
Posts: 24
Joined: May 2012

Both of my husbands parents had esophageal cancer and did not survive. When my husband found out he had it and was given the option of surgery (he was early stage)he was not sure if he wanted to go through with it. He saw what his parents went through. I also saw a difference in the way my husband acted. It was like he tried to run from the reality. He did not want to talk about it at all. He also seemed to try to become controlling as I think he felt things were well out of his control.

I believe a diagnosis of cancer begins a new phase in life. Fears, aniexty, worry, stress, all come into play. In my experience, I tried to give him the space he needed but loved on him through all his acting out even when I was at my wits end. I also rallied his brothers and sisters (he is 1 of 9)around him so they could help him through this.

Each person handles things differently and uniquely. Not only does it effect the person with the cancer but the entire family. We have 2 children ages 8 & 11. We told them but tried to give them limited information.

I have learned to take it day by day, hour by hour, and minute by minute. I tried to not take what he said at the moment seriously but to see how things played out. I really tried to step back and accept his thoughts and then I prayed for encouragement and strength. I prayed he would listen to all his friends and family and make his decision on that.

It is not easy. I am thankful we are post surgery and he is doing better. Things have a way of working out according to a different plan than maybe we want.

Blessings,
Shelly

BobHaze's picture
BobHaze
Posts: 159
Joined: Sep 2011

Hi Laura:

Many cancer centers have social workers and psychologists on staff who are familiar with the particular emotional components of a cancer diagnosis, both on the patient and on the family. I would recommend that you look into the availability of such professional support and encourage Larry to talk to someone. I was early Stage I, but I didn’t even know what that meant for at least a couple of weeks after my diagnosis and I was scared and pissed off for most of that time. So I think I understand Larry’s feelings right now, at least a little bit. But he has to be helped to see beyond his anger.

This is a very serious disease, but it is treatable. I know it’s weird to wrap your mind around, but he is actually lucky to be Stage 2 or 3 – just ask one of the many Stage IV folks on this board and I think you’ll find they would gladly change places with Larry. It’s important to attack EC vigorously and allow the very competent doctors at U of M to treat him, because if he stops treatment the outcome is beyond doubt.

FEC,
Bob
T1aN0M0
Dx 8/3/11
MIE 9/23/11

BMGky
Posts: 666
Joined: May 2010

Although I'd love to offer folksy advice about why he is angry, etc., but I wouldn't know what I was talking about. The diagnosis is such a shock. Each person deals with the disbelief that this is happening to him/her and his family in different ways.

I do know that once treatment started, my husband and I felt like we were doing something. We were fighting back. We focused on survival. My husband is one of those fortunate to have the chemo/radiation and surgery. He is a two year survivor.

Treatment is challenging. Be sure he has anti-nausea meds as needed. Now is not the time to be brave and say you won't take pain medicine. It can be needed. Eating becomes problematic in some instances. His j-tube was a blessing. The pump is easy to use. I'm glad he didn't get a stent. During treatment, he was hospitalized a couple of times. Dehydration is something that can quickly sneak up on the patient and can make them feel awful so if he seems particularly tired, weak, ask if he is dehydrated.

There were times when my husband said that he didn't think he could do this. I said that oh, yes, you will. This sounds rough, I know. For some, this is the road you travel to survival. At age 70, he was fortunate they chose to treat him.

That being said: While experiencing occasional stomach issues due to his own improper eating choices, he eats pretty much anything he wants. He practices full time. We have been to Colorado for watching our grandchildren ski; to Disney World with grandchildren, and to Europe with grandchildren, all following his treatment. I mention these things to emphasize that life returns to joy and fuller appreciation as your health rebounds from the treatment and surgery.

So, go for it!! Fight it!! and ask for help here. More knowledgeable people than I can give much better information.

Wishing you the best. The caregiver undergoes the treatment and experiences the diagnosis with their loved one.

BMGky

jim2011's picture
jim2011
Posts: 116
Joined: Sep 2011

My mother died fron EC 10 years ago. When I was diagnosed with the same I expected the worst and I fought it as hard as my wife and kids could. I am 56 years old and my kids are grown but they rallied as well as my wife did. Someone went to each of my appointments with me and I think that is why I am here today. Rally your troups for the fight of your life. Yesterday as I was playing with one of my grand daughters I thanked god for the extra time he is allowing me on this world. I wish you the best!!!
Jim

NLMCEM
Posts: 52
Joined: Aug 2010

every one of the post here are right on.

My husband Nino also said he was not going to deal with chemo and radiation and was very upset. Then as he learned more from me reading what I found here and at other sites even though at first he was mad at me for reading and telling him all the positive and negative he began to think twice. Of course i also had to learn what to offer that I learned and when as to not up set him.

Being the caregiver, family member, what ever we are as a loved one wanting to help can be very trying. Just know Larry may say things and do not take it personal although that is very hard to do. You seeking help as a caregiver will be such a great help to him in the long run and I applaud you for doing so as it is not an easy job.

The main thing he is getting the test done and just take it a day at a time.
It is a roller coaster ride this EC.
Best to you and Larry.

EC Fighter Caregiver, Carolyn

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